Isolation in a sea of "experts": Identifying the parental struggles caring for children with early-onset obesity

Authors: BRYANT, KATHLEEN - University Of Texas Health Science Center; SANDHU, JAGNOOR - University Of Texas Health Science Center; NGUYEN, JESSICA - Baylor College Of Medicine; ASONYE, ELIZABETH - University Of Texas Health Science Center; Thompson, Deborah - Debbe; SISLEY, STEPHANIE - Children'S Nutrition Research Center (CNRC)

Submitted to: Childhood Obesity
Publication Type: Peer Reviewed Journal
Publication Acceptance Date: 8/22/2022
Publication Date: 9/16/2022
Citation: Bryant, K., Sandhu, J., Nguyen, J., Asonye, E., Thompson, D.J., Sisley, S. 2022. Isolation in a sea of "experts": Identifying the parental struggles caring for children with early-onset obesity. Childhood Obesity. https://doi.org/10.1089/chi.2022.0089.
DOI: https://doi.org/10.1089/chi.2022.0089

Interpretive Summary: Children with obesity are at risk of several issues including medical diseases such as diabetes and high blood pressure as well as social stresses such as bullying. Parents of children who have struggled with obesity from an early age may face many challenges but these have not been systematically studied. In this study, we performed interviews of parents of children with early-onset obesity seen in the endocrine clinic at Texas Children's Hospital. We found that these parents feel extremely isolated as they care for their children. They face significant struggles and 1) face barriers in multiple aspects of life, 2) feel they have to carry all of the burdens, and 3) struggle to get their child seen as an individual. Overall, we found that parents implementing lifestyle changes at home often do not receive support from their immediate and extended family. They blame themselves and struggle with protecting their child's self-esteem. Last, they face significant judgement and dismissal by the medical community. Thus, our research shows that parents of children with early-onset obesity face significant struggles to implement lifestyle changes for their child and do not have good support from their families or from the medical community. This work is important as it demonstrates areas where parents likely need additional support as they try to help improve their child's health as well as highlighting significant barriers to these children receiving appropriate and compassionate care.

Technical Abstract: Severe early-onset childhood obesity is diagnosed by having a BMI >120% of the 95th percentile before age 5 years. Treatment for early-onset obesity is frequently unsuccessful. Prior studies have shown parents of children with obesity often face stigmatization and those who experience weight bias also experience poorer medical care. Home environment influences many risk factors, and parents are crucial for intervention. Research on the parental perspective of care is lacking and greater understanding could increase the effectiveness of treatment. We sought to understand the common stressors and obstacles parents encounter caring for a child with early-onset severe obesity. Parents of children with early-onset severe obesity participated in semistructured interviews. Interviews were digitally recorded, transcribed verbatim, coded, and analyzed using hybrid thematic analysis. We identified a global theme of "Isolation in a sea of 'experts'," supported by three organizing themes: (i) Facing barriers at every turn; (ii) Carrying all the burdens; and (iii) Struggling to get their child seen as an individual. Within each organizing theme, subthemes emerged that highlighted the struggles that parents encountered. These included significant conflict with others when attempting to implement dietary changes (e.g., spouses, other children, and extended family), protecting their child's self-esteem, perceived weight bias from medical staff, lack of experienced obesity clinicians, lack of access to weight management services, and judgment from others (e.g., family, friends, and strangers). This study highlighted that many parents of children with early-onset severe obesity felt significant struggles, both internal and external. Understanding the barriers parents face when caring for their children is critical to improving relationships and medical care.